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CALIFORNIA END OF LIFE OPTION ACT Lael Duncan, MD Medical Director of Consultation Objectives Describe the purpose of the End of Life Option Act in California.
CALIFORNIA END OF LIFE OPTION ACT Lael Duncan, MD Medical Director of Consultation Objectives Describe the purpose of the End of Life Option Act in California. (EoLOA) Demonstrate knowledge of demographics in states where similar legislation is in place List requirements for patient eligibility. Demonstrate knowledge of the process for implementation Describe the ethical considerations underlying actions providers and healthcare workers may choose to take Discuss how organizations can address the formation of a policy for responding to patients and families. End of Life Option Act Resources California Medical Association & Ca. Medical Board On Call Brief Document 3459 CMA legal staff Coalition for Compassionate Care UC Hastings Consortium Document End of Life Option Act Task Force CCCC Perspective Our goal is to: Assist healthcare professionals with learning how to guide patients in exploring their options for care during a serious illness, help patients express their informed choices, and strengthen the healthcare environment where those personal choices will be honored. The End of Life Option Act On October 5, 2015, California became the fifth state in the nation to allow a terminally ill patient to request a drug to end their life, prescribed pursuant to the provisions of the law. Oregon 1998 Washington Montana 2009 Vermont 2013 The California End of Life Option Act ( EoL OA ) becomes effective June 9, 2016 Acknowledge the road. In context Patient Autonomy Shared decision making Beneficence vs non-malficence Personal integrity Professionalism AB X2-15: The End of Life Option Act Terminology Physician assisted death/dying (PAD) Medical aid in dying Aid in dying drug New California End of Life Option Act New Legislation: AB X2-15 End of Life Option Act: Gives interested patients a legal right to choose and receive medication to hasten death in setting of terminal illness. Becomes active June 9, 2016 The legislation covers: Patient eligibility Actions of the attending physician, consulting physician and mental health specialist Actions for healthcare organizations Protections and immunities Management of medications Participation and eligibility No provider, healthcare worker or organization is required to participate or to refer patients Not all providers or patients CAN participate Patient eligibility Adult patient (18 years or more) Resident* of California Terminal* illness Terminal=incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgment, result in death within six (6) months. Capacity* to make medical decisions Request is fully voluntary and in person Can self-administer medication *Terms defined in the legislation and on forms Process, Participation Requires involvement of 2 physicians minimum: Attending Physician has primary responsibility for the health care of an individual and treatment of the individual s terminal disease. Chosen by the Patient Consulting Physician a physician independent from the attending who is qualified by specialty or experience to make a diagnosis or prognosis regarding a terminal disease. Mental Health Specialist If there is any question of a mental disorder, a mental health specialist (psychiatrist or licensed psychologist) must determine the individual has capacity to make medical decisions. Process 2 oral requests to the Attending 15 days apart 1 witnessed written request to the Attending Attending and Consulting physician agree on: Diagnosis of a terminal disease Prognosis of 6 months or less of life Capacity to make medical decisions (Mental Health referral if indicated) Proper documentation Patient properly informed & counseled Patient attestation form 48 hours prior to selfadministered aid-in-dying drug ingestion Forms defined by the Act Written request Attending physician check list & compliance form Consulting physician compliance form Interpreter s declaration if used Final attestation Attending physician follow up form Medical Board of CA provides oversight of forms CDPH will have forms available on the website Responsibilities of the Attending Physician Determine if patient is eligible & qualified Assess terminal disease Assess capacity for decision making Confirm voluntariness of request Rule out mental disorder or refer for evaluation Rule out coercion or undue influence Complete proper documentation Counsel the patient Responsibilities of the Attending Physician continued. To confirm the patient is making an informed decision. Discuss the following: Diagnosis, prognosis Result of ingesting aid-in-dying drug Option to obtain drug and not take it Feasible alternatives (specified) Refer to Consulting Physician Responsibilities of the Attending Physician Counsel the patient about importance of: Having another person present Choice of location (not public) Notifying next of kin Participation in hospice program Keeping drugs in safe place Option to withdrawal or rescind request required at time of evaluation and when writing prescription Discussing alternatives to assisted death Palliative care, comfort care Pain management Hospice care Withdrawal or withholding of life sustaining treatments Palliative sedation Voluntary stopping of eating and drinking Responsibilities of the Consulting Physician Examine the patient Confirm terminal diagnosis/prognosis Confirm capacity for decision-making, acting voluntarily, making informed decision Fulfill documentation in record Submit the compliance form to attending MD Participation Participation is voluntary Offering advise or counsel about EoLOA is not required if individuals or organizations are opposed by reasons of conscience, morality or ethics Physicians must make medical records available to the patient, upon request pursuant to law, even if the physician is not participating in the EoLOA provisions Providing information or referral are not considered participation. Participation in healthcare organizations Healthcare organization participation is voluntary Organizations may choose a level of participation that suits their needs and is in line with their own mission and values Organizations may prohibit employees from participating as defined in the Act. (443.15) Exceptions: Providing information and referral (not considered participation) Some Organization policy options Embrace ~ Full participation (e.g. protocols) Educate ~ Support or facilitate (e.g. make referral to supportive physician, staff actively involved) Distance ~ Referral only to source of information such as an advocacy group (staff not allowed to be involved) Opt Out ~ Refuse to allow staff to discuss, no physician referral, may include discharging patients who choose this option and sanctions for staff and providers Levels of support Full participation could include Designate social worker to explore request Established relationship with dispensing pharmacy Medical Directors write prescription Staff can be present at time of ingestion and fully support patient and family during the process Optional levels of participation Educate/Support could include Facilitate referral to supportive physician May or may not be present at ingestion Distance stance could include Refer to appropriate advocacy organizations Staff not present at time of ingestion Opt-out Prohibition for staff participation, sanctions in place (see section ) What goes in the health record? All oral requests Written requests Attending physician diagnosis, prognosis, and all assessments Consulting physician s diagnosis, prognosis and all assessments Any mental health assessment Record of offer to allow patient to rescind or withdrawal request Note that all requirements met Which drug(s) are dispensed What goes to the CA. Department of Public Health? Copy of written request Attending physician check list and compliance form w drug & pharmacy information Consulting physician compliance form. Later Final attestation by patient Follow up form from attending physician ( 30 from death) Death certificate (automatic) Payment and cost To be determined for California There will be variations Private insurance providers will have their own polices No federal dollars can be used to cover this option = Medicare, Veterans Administration MediCal will probably cover care Basic cost= 2-4 provider visits, plus drug Developing best practices EoLOA End of life care planning for all patients Family & care giver education Use of POLST forms Avoiding EMS intervention Advance Care Planning Communities & Patients ACP SYSTEMS to incorporate Conversations into routine care ACP Across the Continuum Age 18 Complete an Advance Directive Update Advance Directive Periodically Diagnosed with Serious or Chronic, Progressive Illness (at any age) Complete a POLST Form Treatment Wishes Honored CCCC perspective on Advance Care Planning The death certificate: By law, assisted death is not suicide Source: Flickr user hisgett Death Certificate The ACT is silent as to the cause of death to be listed Not Suicide List cause of death that is most accurate Act does not preclude listing underlying terminal illness and or pursuant to End of Life Option Act 1 Different from Oregon Privacy 1. On Call Brief Document 3459 CMA Legal Counsel January 2016 Maintaining professionalism Understand your own position Know your employer s position Decide in advance how you will approach this conversation How do you know who is participating? Resources and connections for participation Sharing of information and support among colleagues County medical associations CDHP number: new legislation SB1002 Advocacy agencies? Demographics : OR Experience Who asks about aid-in-dying drugs or expresses a wish to hasten death? Why patients consider using aid-in-dying drugs Usually not due to depression or other mental disorder 1 Ganzini, L., Nelson HD, Schmidt TA, Kraemer DF, Delorit MA, Lee MA, Physicians Experiences with the Oregon Death with Dignity Act NEMJ 342(2000): Block SD, Assessing and managing depression in the terminally ill patient. Ann Int Med 132(2000) Data from the Oregon Death With Dignity Act Gender 51% male / 49% female Age at death 69.8% over 65, median 71 yrs Race 96.6% Caucasian Married or Domestic Partner 45% Widowed 23% Enrolled in hospice 90.5% Insured 98.6% Cancer 77.1% ALS 8% Lower respiratory disease 4.5% Heart disease 2.6% Source: Oregon Public Health Authority https://public.health.oregon.gov/providerpartnerresources/evaluationresearch/ DeathwithDignityAct/Pages/ar-index.aspx Oregon DWDA: Patient diagnosis 90% 80% 70% Cancer ALS 60% 50% 40% Heart disease 30% 20% 10% 0% Pre Source: Oregon Public Health Authority https://public.health.oregon.gov/providerpartnerresources/evaluationresearch/ DeathwithDignityAct/Pages/ar-index.aspx Oregon DWDA: Prescription Recipients vs. Actual Deaths DWDA Prescription Recipients 150 DWDA Deaths Source: Oregon Public Health Authority https://public.health.oregon.gov/providerpartnerresources/evaluationresearch/ DeathwithDignityAct/Pages/ar-index.aspx Source: Oregon Public Health Authority https://public.health.oregon.gov/providerpartnerresources/evaluationresearch/ DeathwithDignityAct/Pages/ar-index.aspx Medical aid in dying is not a failure of palliative care. Receipt of the medication may be a form of palliation. Aid-in-dying drug requests: Oregon experience Patient Concern Percent Less able to engage in enjoyable activities 89.7% Losing autonomy 91.6% Loss of dignity 78.7% Losing control of bodily functions 48.2% Burden on family/friends/caregivers 41.1% Inadequate pain control or fear of it 25.2% Financial implications of treatment 3.1% Source: Oregon Public Health Authority https://public.health.oregon.gov/providerpartnerresources/ EvaluationResearch/DeathwithDignityAct/Pages/ar-index.aspx Concerns over personal well-being Poor quality of life (present or future) Inability to pursue pleasurable activities Loss of control Loss of dignity Loss of meaning in life Desire for control of circumstances of death McPhee, S.J., Winker, M.A., Rabow, M.W., Pantilat, S.Z., Markowitz, A.J., (Eds.) (2011) Care at the close of life: Evidence and experience. McGraw Hill Medical Fear of future, worries over impact on others Being a burden Being dependent for personal care Fear of being a financial drain on family McPhee, S.J., Winker, M.A., Rabow, M.W., Pantilat, S.Z., Markowitz, A.J., (Eds.) (2011) Care at the close of life: Evidence and experience. McGraw Hill Medical Issues of declining health Loss of control of bodily functions Pain or physical suffering Fear of future pain and physical suffering McPhee, S.J., Winker, M.A., Rabow, M.W., Pantilat, S.Z., Markowitz, A.J., (Eds.) (2011) Care at the close of life: Evidence and experience. McGraw Hill Medical Outcomes for family Family members of patients who requested information on aid-in-dying drugs 95 requests for aid in dying, 56 prescriptions, 36 lethal ingestions Comparison group: family members of patients with cancer, ALS Ganzini L, Goy ER, Dobscha SK, Prigerson H. Mental health outcomes of family members of Oregonians who request physician aid in dying. J Pain Symptom Manage Dec;38(6): doi: /j.jpainsymman Oregon family experiences More likely to believe that their loved one's choices were honored Fewer regrets about how the loved one died No differences in primary mental health outcomes of depression, grief, or mental health services use. Felt more prepared and accepting of the death Ganzini L, Goy ER, Dobscha SK, Prigerson H. Mental health outcomes of family members of Oregonians who request physician aid in dying. J Pain Symptom Manage Dec;38(6): doi: /j.jpainsymman Pharmacy & Medication Issues Medications* High doses of barbiturates orally Secobarbital (Seconal) 10g in capsules Pre-medications to include anti-emetics [Zofran + Reglan (1hr before) and beta-blocker (15 min)] Drug costs: Unknown in CA, could be as high as $ Plan or insurance may or may not cover cost *THIS INFORMATION IS NOT A MEDICAL PROTOCOL Oregon data Ingestion to death 2 h average, very occasionally over 24 hours range 5-34 No cases of waking in recent years (total 6/991 associated with underlying problem.) 27 of 218 in OR had a hospice nurse present at ingestion 2015 COALITION FOR COMPASSIONATE CARE OF CALIFORNIA Pharmacy issues Drug availability and pharmacy participation may vary Most pharmacies will develop polices and procedures Right to conscientiously object: Pharmacy businesses and individuals Counseling of patients Drug storage at home and drug disposal Legal concerns e.g. refusal to dispense Ethics and aid-in-dying drugs Conscientious practice is the action that comes of respecting one s own moral beliefs while at the same time respecting the moral beliefs of others. Make space for your own feelings, and those of others around you. Task Force to Improve Care of Terminally-Ill Oregonians.The Oregon Death With Dignity Act: A Guidebook for Health Care Professionals. Oregon-Death-with-Dignity-Act-Guidebook.pdf Conversations How do you respond if asked about the End of Life Option Act Know the facts: who qualifies, physician involvement, specific forms to be completed, etc. Be aware of your own values and beliefs. Patients want to be respected and understood. Know your employer s position on level of involvement, response to requests, referrals, conscientious objector or conscientious participant options. Guidelines Clarify what the patient is asking A first request a) does not require definitive refusal or acceptance b) should prompt a discussion Meet the need for comfort & reassurance Make a plan with the patient Putting requests in context Why is the patient thinking along these lines? Need for information: Patient, provider Shift from coping to planning Need for assurance that future suffering will be ameliorated Desire for back up plan Need for peace of mind Areas of Exploration Expectations and fears Knowledge held, knowledge needed Suffering or physical symptoms Identifying patient goals Sense of meaning and quality in life Role of family or caregivers Spirituality Existential concerns Questions for discussion v What worries you most? v Are you thinking about your own death? v Have people close to you died? How did it go? v How specifically would you like me to assist you? v Are you suffering right now? v What kind of pain/suffering concerns you most? Understanding patient concerns v How has your illness affected your family? v What things still give you pleasure? v How can we make the most of the time you have? v Are there things you would like to do with the time you have remaining? Living well now, in these moments, being truly alive until one is actively dying. Tools to help with conversations CoalitionCCC.org/store Resources from the California Medical Association Final Points Requests for or thoughts of hastened death can be common among those with advanced illness. Responding to requests can be emotionally challenging. Suffering is complex and personal. Take the time to understand the situation and you will be better prepared to address the needs of the patient. Gallagher R. Can t we get this over with? An approach to assessing the patient who requests hastened death. Canadian Family Physician 2009 Vol. 55: Final Points The Forest and the Trees Take advantage opportunities for exploration and discussions about end of life care planning for all patients with serious or terminal illness. Learn more. Conversation Skills for End of Life Care Planning. May 31, 2016 Sacramento End of Life Option Act: Overview and Discussion Webinar 12pm-1pm June 7 POLST: It Starts with a Conversation July 14-15, 2016 San Francisco CCCC & CSU PCI online training in advance care planning See our website for complete details Let us bring training and expertise to you CCCC consulting service Brings education to your organization Customizes trainings to fit your schedule, geographic and cultural needs Topics include POLST, advance care planning, palliative care, conversation skills, cultural sensitivity and more Contact: (Attn: Consulting) Lael Duncan, MD Medical Director of Consulting Services Tel Direct CoalitionCCC.org
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